The planned launch of the federated data platform (FDP) should take note of lessons learned from previous NHS digital rollouts and not be too hasty, says Matthew Taylor.
This article was first published in digitalhealth on 17 November 2023 prior to details of the contract award being confirmed publicly by NHS England.
A credible solution to join up the fragmented and disparate data sets amongst NHS organisations is long awaited and highly anticipated. It’s a problem that has dogged the NHS for decades and a catalogue of failed attempts lie in its wake. Yet, years later a long-term workable solution to connect and access data; coordinate care; free up clinician time and deliver efficient and safe care for patients and communities has not materialised – perhaps until now.
NHS England (NHSE) is on the cusp of launching a new federated data platform (FDP) for the health service, something which has the potential to bring key benefits. Clinicians will be able to access live data of available theatre slots, staff availability, and individual patient data suitable for particular procedures at the touch of a button – it will be game changing. Successful roll out of the new FDP has the potential to help an NHS currently under relentless and unabating pressure by providing significant improvements to waiting times and care coordination across the health system, reduce the burden on frontline staff and allow patients better access to their own care.
It is crucial to earn back this faith if the FDP is to succeed as a program
The FDP is not the NHS’s first attempt to integrate a stubbornly difficult data sharing environment. Other projects since the early 2000s have ultimately failed because of rushed development, hasty co-production, a lack of genuine patient engagement and data breaches. This has in the past led to a significant number of patients choosing to opt out of sharing their information resulting in public mistrust in how the NHS protects patient data. It is crucial to earn back this faith if the FDP is to succeed as a program which effectively addresses the data issues the NHS sorely needs to fix.
Both the BMA and the Doctors Association have already raised concerns over data privacy and the consultation process. Yet whilst some will never feel comfortable with major international businesses, especially when some of those may have undertaken controversial projects in the past, the important public interest issues around data security and value for money are paramount.
Acknowledging the risk that significant numbers of patients may exercise their right not to opt-in to sharing their health data, what lessons can be learnt from history to ensure the FDP does not meet a similar fate?
Lessons to take on board
The haste of past NHS IT and digital rollouts is one of the most significant lessons and should be avoided at all costs. There was simply not enough time given for patient users, stakeholders and privacy campaigners to be engaged in the programme rollout of NPfIT in the early 2000s, and for their experiences and views to be genuinely considered. Those lessons have been heeded and to date during the rollout of the FDP, patients, stakeholders and healthcare organisations have been offered feedback and discussion routes. This has provided ICSs and the public alike the opportunity to stay involved with the FDP as they see fit. Yet despite this communication channel, public support risks still being hard to win, especially considering the data breaches the NHS has experienced over the last few years.
It is crucial that ICSs are given the freedom to decide if and when to opt in but also that FDP managers work closely with those systems that already have their own platforms
It’s also clear that whether it’s the NHS or the supplier, there should be care taken not to overpromise or raise expectations. Implementing software of this magnitude is extremely difficult, not least because some parts of the NHS still operate through outdated systems including pen and paper. Moreover, we must temper expectations of local impact, as ICSs do not have to adopt this national FDP system.
While for many systems the FDP will offer new and much needed capacity, there are others that have already build their own very effective platforms. It is crucial that ICSs are given the freedom to decide if and when to opt in but also that FDP managers work closely with those systems that already have their own platforms.
Despite the benefits we want the FDP to bring to the NHS, its ultimate success rests on trust. ICSs need to trust that this federated data platform will work to its marketed goals, and patients need to trust that their data is in safe hands. Similarly, NHSE and the chosen FDP supplier need to earn that trust by protecting data with the highest levels of cybersecurity and data integrity. There also needs to be a space for genuine feedback which the public know will be actioned. If there’s one lesson we can reflect on when looking at the history of the NHS and its data, it’s that the health service is in dire need out of an efficient and effective data platform that works to improve patient care and deliver a high-quality service.
Matthew Taylor is chief executive of the NHS Confederation. You can follow Matthew on Twitter @FRSAMatthew